maybe this explains why I never write on my blog any more

I keep looking at my right forearm, the top side, where an ugly purple-and-yellow bruise continues to develop. There’s a hole in the middle of it, a hole where a nurse on the second floor at Dana Farber, a lovely nurse from Kenya who was sweet and kind, did a very bad job of putting in an IV line. I knew it was bad the minute it went in, I knew it was bad as she drew out the 5 vials of my blood. I could tell when the needle went in that it wasn’t done right because it didn’t hurt in the right way. When an IV line is put in right, it feels a certain way. It sucks and it hurts, but the best and kindest and most experienced nurses get it right almost every time. I could see the needle sticking out flimsily across the skin of my arm, it wasn’t in deep enough. Sure enough, after she drew my labs, she said, oh, this isn’t a good one, it won’t work. And she pulled the needle out and my vein “blew.” The vein puffs up, bulges, and an immediate secret soreness and bruising start. There is a hole in my arm in the middle of a purple-and-yellow bruise, rather large, hard to hide when I walk around sleeveless in the summer.

 

She put in another line and I knew it was another bad one, but I didn’t say anything. I continued to converse with her, to love her as she was, to ask about her family and children and to tell her about mine.

 

When I went up to the 7th floor of Dana Farber for my infusion, my infusion nurse took the bandages off of my [second] line and said “this is no good” and pulled the needle out. I have a spot in that spot, but no bruise, thank god. I didn’t let them poke me again. I just got my SubQ shot in my belly without getting fluids through an IV like I usually do.

This was not my usual infusion nurse who I haven’t seen 2 Wednesdays in-a-row. I explained to this infusion nurse not to stab my belly when she gave me my SubQ Velcade injection. But she did, she stabbed me hard and I actually screamed out in pain. I rarely do that, it happens when a nurse is not attentive or skilled. I am sure 98% of them have never had a SubQ shot of chemo to the belly. I have a dark spot on my belly where she did it wrong.

 

The week before, June 29, Day 1 of Cycle 11, down in blood draw on the second floor of Dana Farber, they sent me in to a tech and not a nurse. When you get an IV line put in, you have to go to an RN. Your wait is longer. You can’t see a phlebotomist and there are fewer nurses than phlebotomists. And it takes longer to have a vein opened than to get a simple blood sample (or 5 or 8 samples) taken.

I knew he was wrong, I thought he was wrong, but I didn’t say anything. I let him draw my 8 vials of blood and then remove the needle, bandage me up. I had to go back in and have a nurse insert an IV line after all. Why couldn’t I speak up and advocate for myself when I saw that his badge didn’t have an “RN” after his name? Because I can’t even choose my battles. I am tired and weary and I am tired of the world. I am full of medicines and I am trying to eat well and I can’t do any of it. I make pesto from basil I picked at the farm, but I can’t cook. I have this broken rib and I can’t move and do what I want. I am already embattled, what’s one more wrong prick of a needle to my body? What is one more crumb of pain?

 

That was the start of one of the worst two weeks of my life since starting this regimen last October. I’ve been treated like shit by several people in my life since Day 1, Cycle 11, not just the little pricks in my arms and belly, but in the big ways.

 

I hope for much more out of a life of an incurable cancer. I expect more. My life requires shitty, ongoing, unpredictable treatment. My chemo is not working any more. My numbers have hit a level where I’ll be looking for a new regimen soon. I have not heard this yet from my oncologist, but I know my M-spike has reached the upper limit that is okay for staying on this clinical trial. My numbers went down only for the first two cycles. My numbers were lower when I was off of chemo last year and yet my body is subjected to devastating chemicals with lasting damages. I know the medicine is faulty, but I’d be dead by now if I hadn’t done it. I know I have to keep taking chemo to live.

 

This is the nature of multiple myeloma. So far, I’m not in the miracles category and thankfully, I’m not in the worst-case-scenario category. I’m pretty much in the middle. With multiple myeloma,  chemos usually last a year or so and on to the next (I have a friend with mm and he got 5 years out of Revlimid, no side effects and here am I, I couldn’t tolerate it for more than 10 months!). I also know people who did 3 to 8 months of the same regimen we all start on and never had to do any of it again. I know someone whose myeloma disappeared after doing induction chemo and Rick Simpson Oil. Nothing, nada. She’s healed completely from it for now. Some people get 2 years, 3 years, 5 years. Some get a stem cell transplant and get 2-3 months of response, some get 10 years. Some never recover. Some die.

 

Most myeloma is smart and once it experiences one drug, it figures it out and gets stronger. It won’t respond to it again, usually. It also is stronger in the face of the next medicine. This includes “alternatives” for those of you who think you know how to cure any and all cancers. The myeloma is smart and strong and its DNA-copying mechanisms are amazing. They also can mutate into new, harder-to-treat forms. I’m not there yet, I hope never to be.

 

I was incredibly fortunate to have had my 10 months off of treatment last year, but it made me think I’d have that again. And now, the horrific reality of this stupid fucking cancer that I should not have, that I don’t want, that I’ve done nothing to obtain, is in my face.

 

I don’t say these things to make anyone feel bad for me or for you to feel bad in yourself. I am being poetic and dramatic. I don’t feel this way every moment. But after this cycle, complete with my fractured rib, my numbers going up, my increase in interpersonal conflicts, I’m knocked down another peg.

 

I suppose I will find my peace and strength. I will be my spirit, my eyes will shine, I will stand upright. I won’t feel fat and ugly and my skin won’t be bruised, my brain and thinking will be clear. I won’t wake up without remembering if I’ve slept or not or what time it is. I won’t be exhausted.

 

I don’t want to keep fighting. I don’t want to look down and see the purple and yellow shape of a bird with a hollow eye on my arm, I don’t want to feel my ribs shifting in my torso as if they will collapse and give way under the weight of my life, under the weight of gravity.

 

How can someone not reach inside my bone marrow and into my bloodstream and remove the cells that signal themselves to create osteoclasts out of plasma cells? How can my body have so devastatingly betrayed me?

 

This is not a good mystery. This cancer doesn’t solve a thing. It doesn’t take down the weak like the lion attacking the wounded or slow zebra. It doesn’t have a heart or a part in nature. It’s the Devil from Hell.

I want it out of my body and out of my life. I did not welcome it here and it does not belong to me.

 

Please make it stop.

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save the date

if you write poems about pomegranates, don’t bother submitting to us*

I’ll be a featured reader next month at Unbuttoned, Thursday, September 12, 7-8:30 pm. There are usually 6 open mic slots followed by one or two featured readers. I know I’ll be reading alongside another poet.

Luthier’s, Cottage Street, Easthampton

*roughly quoted from a literary journal on their submissions page. Why do I bother with fucks like these? Where are my people?

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Mirena and Me

Here’s a likeness of the little baby that was inserted by an MD into my nether regions 2 weeks ago. I hope it is as nicely centered in my uterus as the one below is centered here on my blog.

I finally found an OB/GYN who I like, amazingly in the same practice as the asshole who did a vaginal ultrasound in January and failed to tell me that I have a fibroid tumor embedded in my uterine lining which was causing me to lose copious amounts of blood for 5 months.

I have now been off of my oral progesterone for 13 days. Not a day has gone by in the last 3-and-a-half months in which I didn’t bleed, but it is GETTING BETTER ALL THE TIME.

I have woken up 2 mornings in a row with color in my face (sort of).

I have gone on 3 hikes this week (including that crazy big hill on Rattlesnake Knob—vigorous!) in which I did not find myself gasping for breath.

The Mirena IUD is made by Bayer, the same company that manufactures my cat’s flea medication and your favorite brand-name aspirin.

When I visit my family in Germany, traveling from the airport or train station, we always go by the Bayer plant in Leverkusen, on the Rhine River.

I feel so global. Where was my IUD manufactured and does it have traces of flea poison alongside the miniscule amounts of progesterone that it administers to my uterus at regular intervals?

I tried to look for the IUD strings last week, but I could not find them. At which point I was already having intense pain on my R ovary and bleeding heavily. In my panic, I called “Dr. L w.” I was sure my IUD had migrated and was already perforating my abdominal wall and was about to emerge from my nostrils, but “Dr. L w” assured me that we will look for the strings together on my upcoming 7-week follow-up appointment.

Looking up my cookie with an OB/GYN to find the strings of my Bayer-engineered IUD?

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selfish

Happy 79th Birthday to my mom!

As her memory goes, I wonder what I am responsible for. Am I the holder and keeper of her memories and secrets? When can I tell them? What does my brother know? What does she remember? Is what I know true?

I do wish my mother happiness, but it seems an elusive wish. She says she has always been lucky, lucky to have come to the United States and to have found the life she did. But her childhood tells a story, not of luck, but of trauma. I wonder how this fits into her definition of luck; but I will never ask her.

I titled this selfish because I am not using my post today only for a birthday wish for my mother. I don’t really think I’m selfish, because it’s my blog and I want to use it just for that—for myself. But I do feel guilty a tiny bit. I think being a mother, a daughter, a wife, means I always have a tiny lingering guilt. I am sure not all women are like this. I wish I could shake it, but apparently I am not yet evolved to that point. Perhaps this could be my Christmas wish for myself or my New Year’s resolution.

I have snippets of writing lately, nothing coming out whole cloth like I used to have. I know, honestly, most of that needed heavy editing anyway.

What do I wish for? Better poems, more poems, dream poems, publishable poems, poems that will make you swoon, will make you weep, make you laugh, make you buy my books (what books, twinkly? oh, right), fruit poems, frozen bud poems, bloody blue poems, pink poems, feather poems, leaf-and-snow poems, mom poems, wife poems, marriage poems, sex poems, fuck poems, love poems, fucking poems, magical poems, clear poems, anatomical parts poems, important poems, a-political poems, no-more-guns poems, deep poems, no-murky-bits poems. Enough! This kind of thinking is so anti-Alexander Technique that I can hardly continue to allow myself its luxurious indulgence.

Here are 2 recent poem snippets:

(SNIPPET ONE)

When Shall I Be Delivered

I begged for more from the world

It started inside
a pinprick
where I was once attached

You have not delivered me

With each bout
of bleeding
my density increases
alongside my insatiable hunger

My marrow
pumping erythrocytes
for every drop
that falls

Not much
they always say
a few tablespoons

If men bled
they would find
a more poetic measure
than cups and spoons
(a woman’s place is in the kitchen)

But I know the feeling
of the soldier
draining into the muddy earth
the sand with its greed
taking more than its share
pints and quarts and gallons for drenching

I am ready for the firing squad
or operating theater

I am ready for my uterus
to be yanked out by
its mooring ligaments

No scars
only
a virginal torso
left

I didn’t need you any more
anyway

But thanks
for the ride

(SNIPPET 2)

December 17

My mother is a husk
a Christmas walnut
cracked open

The meat of her
gone

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Once in a while Wednesday: tough stough/tuff stuff

A recent photo of me on our trip to San Diego. As adorable, sexy, beautiful, and fascinating as I am, I hope you can still tell I’m saying don’t fuck with me.

I will tell you the sordid detail now, why I am bleeding and won’t stop, why I bled last year for 67 days out of 90, why why why and why I didn’t know the full story of my own blood loss.

2 days after my ER visit in January, I had an in-office vaginal ultrasound (hey, buck up readers, did you think I wasn’t gonna mention my vagina?) by none other than the OB/GYN who had me in the stirrups in the ER.

Fast-forward to about 6 weeks ago when I went to the OB/GYN’s office, yet again, due to menstrual flooding (refusing to see the Offending Doctor, of course). When I was in the office talking to yet another doctor, thankfully not in stirrups, what did I find out? That back in January, on that very ultrasound, a 3+ cm fibroid tumor was found at the back of my uterus, embedded in the lining in such a way that I WILL ALWAYS END UP FLOODING WITHOUT CESSATION until I am on the other side of menopause and it goes away or until some hormonal or surgical intervention takes place.

Why my body was able to not bleed for almost 6 months (completely off of progesterone but under the loving care of my acupuncturist), I do not know. But once I started, I haven’t stopped. I’ve been able to cut back the progesterone to a more reasonable and less interfering dose, but I can’t go off of it until I undergo one of 4 options, each of which is fairly traumatic in scope to me.

It took me a while of reeling from the information (appx 3 weeks) that the OB/GYN, the office staff, the nursing staff, the radiology department (does that about cover it?) NEVER told me I have a tumor (fibroids are benign btw) before I could conceive of a plan. I have been under my acupuncturist’s care, but I was not in a place where I trusted the gynecologic practice I was with. The impending week away to California also meant that I had to wait until our return to deal with the fibroid.

I spoke with an MD in the same practice at 5:30 am a few Sundays ago and was very pleased with his attention, information, ability to listen and answer questions, and apparent intelligence. I will be seeing this MD on Monday and I will be discussing a few different options so I can make a decision and get off the progesterone and see what my body does in response to whatever choice I make.

I am scared and tired and sad and I got really sad news about my mother yesterday as well. Her health problems are myriad and long-standing, but she has been in a dramatic memory decline for several months. So, I am dealing with that as well, her only daughter and her primary caretaker.

It’s hard. Harder than I could ever have imagined. And I thought having babies was tough stuff. I don’t remember this part being explained to me. The sandwich years of my generation. Can I get a witness?

someone would like you to believe this is what women look like when they need to use the toilet

this is not what I look like

ever

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the tiny visitor

When I was a kid, I had a book about a tiny woodland family that a little girl finds and brings home. She makes them a little house and uses a little wooden spool for a table for them and all sorts of things. I still have the book. It’s all banged up, a small paperback without acid-free pages, obviously. When I found the book a few years ago and read it to my daughters, the story was not as good as I remembered. I loved that book so much. Probably because of all the cuteness of the tiny objects the girl uses to welcome the tiny family. I think that is the name. The Tiny Family. It is by the same guy who wrote the Clifford books, Norman Birdswell. Okay. I did not look any of that up to check for accuracy. I will though because you know how compulsive I am about accuracy.

I am so glad I looked that up. I’m leaving all of my inaccuracies up there, though. Aren’t you proud of me? I got the last name wrong, as you can see. 50 cents, can you believe it? That is how old I am. Why doesn’t my computer have a cent symbol? You don’t like pennies Steve Jobs (RIP)? Oh, crap. I found it. Here: ¢. You want me to do that again? Here: ¢. I could do this all night. Look: ¢. WordPress, all is forgiven. twinkly forgives you for all of your faults. At least for now.

My point is that I haven’t had a period in 5 or 6 months. Mostly because of my fabulous, life-saving, bleeding-stopping acupuncturist. The ONLY person who had a real solution last winter when I was suffering from anemia and wouldn’t stop bleeding for ever and ever. Not the standard medical approach which just kept me bleeding and bleeding and losing more and more blood by the minute the minute I went off of progesterone (You’ll get a period, only it will probably be lighter and won’t last as long MY ASS!).

Well, yours truly started bleeding 11 days ago and I haven’t stopped yet. I’m starting to get anemic. I can feel it. It’s been a few days coming on now. Headaches, dizziness, sore throat, weakness, breathlessness (not the good kind). Yes, of course I take extra iron. But now I have to start eating red meat and more kale (I eat kale about 2ce a week year ’round anyway). Now I have to cook in a cast iron pan (Wait. I already do that regularly too). Now I have to ? See? I have been without my period for so long, I forgot what to do. Wait! I know something….¢

My tiny visitor is back. She is red. She does not wear a tiny flower for a hat. She does not sit on a thimble when she eats her breakfast. She is the same one who visited last year for 67 days out of 90. She is the one I love but who should only be here for a couple of days and then leave me the fuck alone.

Needless to say, I started taking my Yunnan Baiyao TODAY. 11 days is enough. But I’m not in menopause so there’s always that gift. You should see my boobs. LIKE A TEENAGER, I tell you! I will miss them when all of this stops. I really haven’t had boobs like this since my 20s. I won’t miss my other plumpness, though. Fuck you, you midsection bloat.

Sigh Sigh, Tiny Visitor. Sew and Flow, beautiful red flower in my underpants. I hope not to see you for a while. But thanks for the boobs. It was fun (and somewhat painful fer chrissakes! these babies hurt!) while it lasted. One day I’ll kiss you good-bye for good, I just won’t know it until a whole fucking year goes by. Haven’t gotten there yet.

This chart is bullshit. Fuck this chart. It is totally inaccurate. It’s not even red or bloody.

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Once in a While Wednesday

What have we got here? We’ve got me, laid out by anemia, due to too rapid and consistent peri-menopausal blood loss.

Peri-menopause, is it a taboo subject? Is it just something men and teenagers don’t want to hear about? What about all of those male OB/GYNs? What makes them so special? Why do they want to know about it, lecture me about it, be experts in the subject of the unpredictable ebbs and torrents of my blood, the blood that comes out of my darkest place?

Is talking about menstrual blood, women’s blood, worse than talking about other blood? Is it tiresome? It’s not the same as blood from injury, soldier’s blood or surgical blood, violent blood, blood from war. Do we talk about any of it or simply leave out female blood?

I remember none of puberty, none of “developing;” just from one school year to the next I went from being teased for being flat-chested to being teased for being large-chested. Even by my girlfriends, so you know it wasn’t sexist or bullying or anything. But things are different now, right? American culture having evolved as it has, we no longer pay much attention to breasts like in the good ol’ days.

I went in to the ER last night (Tuesday), perhaps as an overreaction to the light-headedness, slight vertigo, and nerves-on-edge for 3 days-in-a-row I had been experiencing due to the aforementioned anemia and due to the urging of the MD on call the night before (Monday) to go in that night. I had some odd notion that I could get BLOOD in the ER. I wanted blood like a vampire in a gothic novel wants blood, but not the feeling sexy kind of vampire. How can a condition so purely part of my sex be so unsexy? I know the answer. I know that owning this is part of graduating out of my reproducing sexuality into the rest-of-my-life sexuality, kundalini.

I think it’s completely wrong that this is the kind of thing that is associated with female blood:

I’ve never passed out in my life. I’ve never gotten blood in my life. Neither of these things happened yesterday either.

I can tell you that when the old (65ish, male) OB/GYN had me in the stirrups and told me to relax those muscles (direct quote), I later had a fantasy (and still do) of taking my strong right leg, tensing it as hard as I could and kicking him in the face with it. Sort of twisting his head away from his spine. A suberb peri-menopausal whiplash. It could be a new reason to land in the ER, in fact.

If he hadn’t been the doctor on call and if I hadn’t already been in the care of his practice since Sunday, I would have declined his “services.” However, if I add up the number of pelvic exams I’ve had in my life, one more is a drop in the bucket. Not that I’m resemble a bucket, au contraire, but you get my meaning.

The best OB/GYN I ever had/knew (do what you will with the unfortunate double entendre), was a good friend back in Ohio. I needed an OB/GYN for all sorts of things I experienced before my pregnancies (like not being able to get pregnant for a while and miscarrying twice). I saw both my OB/GYN and my lay midwife throughout both of my pregnancies.

Until 2 years ago, I had never had an OB/GYN in Massachusetts. I simply went to my fabulous (best MD I’ve ever been in the care of) Primary Care Physician for everything OR to my acupuncturist for things less medical. Now, I have an OB/GYN practice at my disposal, but I don’t have a very comfortable relationship with anyone there. I do love the Nurse Practitioner I’ve seen once, but I don’t like the OB/GYN I saw under duress last night. Sigh.

Once in a while Wednesday–what’s it all about?

What if all it took to please me was alliteration? I would LOVE that, my life to be that simple.

Here are some words for you until we meet again:

harrowing    sepulchre    pulchritude

How can pulchritude refer to beauty when the sound of it reminds me so much of paltry, pustule, and that doctor from last night?

Send loving, healing, iron-filled thoughts and images my way, please. Yours, twinkly

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thankful thursday? (first Thursday of 2012)

Happy first Thursday of 2012, my pets!!!

Do you know that I love triple exclamation points??? more than triple question marks, which I don’t really care for at all!!!

Do you know I love that the word clam is in exclamation?

Do you know that I love this: http://i.imgur.com/CCNSs.gif

I am not sure, however, if I still love Thankful Thursday.

I need gratitude in my life undoubtedly, but I am not sure of the future of Thankful Thursday. I realize this is not some earth-shattering revelation, but it pertains to my blog. The info belongs here and to you, my readers.

In the last few weeks, I notice I’ve hit some sort of snag, if not an outright wall, in my writing, both in the fun and frivolous and in the more confessional, the type of writing I do for this blog. I’ve also been adrift with my poetry (insert frowny-face emoticon here).

I can’t seem to find anything funny to share. I can’t seem to find anything important, either. I don’t want to alienate you, my readers; I don’t want to try your patience; I don’t want to bore you; I don’t want to pour out my whining heart simply because I have an audience.

SPOILER ALERT: stop right here if you don’t love all things menstrual

I’ve been having something of a rough 3 months. Peri-menopause is not always kind, though I love finding new sources of power within.  I just went through an extended bout of bleeding in which, over the course of 64 days, I bled for 47. The days were not all in a row, but what I have been left with is the second most severe period of anemia in my life. The concurrent repercussions of peri-menopause in my personal relationships are also of a flooding nature–tidal and deep, but not always as rhythmic as the tides. It’s hard. It’s confusing. Going deep and in spirals, rudderless and full at the helm–all of these things. If you have a peri-menopausal woman in your life, be kind, take heed, bow down. Throw rose petals and break flower pots. Do whatever it takes. We are forces of nature. FORCES OF NATURE. Get it?

The 2 major bouts I’ve had with anemia have also SUCKED!!! Rather than making any rash decisions while I’m still building up my iron and my health, I will simply play it by ear with the blog. For now, the equation seems clear: lack of iron=lack of creative forces.

I have LOVE LOVE LOVED the last year of blogging. I don’t want to think that it’s over, but I also don’t want to lose you, my readers. If I take a hiatus, I am afraid you’d never know when to come back.

I do have some ideas and plans. I can mix it up a bit, make things simple. Post a photo. Pose a question, strike a pose. I’m thinking on it.

I’ll leave it at that for now.

Thankful for you

Toujours, twinkly

Aw, shucks!!! I can’t really leave you like this, can I my pets? I think this might cheer you up:

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Thankful Thursday–Old Fan, New Fan

I’m feeling a little off today and thought I might need to bitch, rant, and curse. This is why I need forced gratitude.

Something happened recently–I think I missed the last time I’ll ever have my period, IN MY LIFE! This has been part of me for 34 years, and POOF, it’s gone. I think it’s been over 3 months. But if you know anything about menopause, you know that at least it’s unpredictable. A woman could never know it would be her last period. There’s no goodbye to plan for, just waiting to see if any blood will come again.

Look, I know it’s not popular to talk about menstrual blood, but fuck it. Those stupid ads where a pad is shown absorbing water. It’s like it’s a fucking diaper or something. But as Paul says, what do you want them to do, show real blood? Maybe, I think.

I told my acupuncturist that I was sad because maybe I didn’t get to say goodbye to my period and she said maybe my body will hear this and I’ll get my period again with a vengeance. Funny.

The other thing is that at 48, I’m jealous of my friends who are 54 and 55 who still bleed. This makes me older than they are on some level, you know. Fuck it.

The washing machine blips at me

I am in the kitchen, you in your “new” office in the basement

Annie in her own bed (for once)

I need to be grateful, making my lists

So what do I love today?

Fans, old metal fans

If I could understand physics at all, I would know why this design never goes out of style

curved metal petals in a ring around the center to push the air along

I think of fronds and woven grasses on the ceilings of huts in hot places

I had this huge old metal fan that probably my own family got used (that’s how my dad was) and I used it for a long time.

In our old circa 1920 house, you could stick the thing right in the window and it was beautiful. In this house, the windows are too narrow with no sill and short (about 18″ high, if that) and they only open to 45 degrees.  But I used to prop the monster right on the floor to move the air through our stupid long ranch-house anyway. Clearly, the thing needed some attention–the cord and motor were pretty rickety–and because it weighed a ton, it would clank and bang against my legs when I carried it up from the basement. So I found this older guy in Northampton who still knew a thing or two about metal, motors, and repairable small electrics. He fixed it, for all of about 15 bucks. Ed. His shop is so cluttered, dark, and dusty, I don’t know how he breathes or moves around the lamps and hand-mixers and toasters without knocking everything over or how he knows what he’s fixed or not. He wears a big button-down shirt, full open to his large tanned belly, and he has piercing blue eyes in his large face.

Anyway, I brought the hulking beast (the fan, not Ed) home, set it up on the floor. That motor was so damn powerful, it’d knock over a lamp. But I walked away for about a minute and the damn thing started sparking and set the [45-year old] carpet on fire. That was it. I had to let it go.

I still have a large metal box fan that I bought at a tag sale in Stow, Ohio for ten bucks. It works pretty well and Ed fixed the cord on it, too. Just a little afraid to use it…

Those were the days, hunh?

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